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Genevieve Anna Tyrrell is a visual artist and creative writer based in the Orlando area. Please reach out if you have any questions regarding her work, if you'd like to commission a piece, or if you're looking for prints.


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BLOG: Pregnant Zombie Love

Filtering by Tag: pregnancy

Childbirth Plan for POTS Patients & Catch Twenty-Two

Genevieve Tyrrell

I needed rest. I took the medical leave. I have dizzy spells at home frequently and I don't drive much these days. But overall, I'm feeling better because I can lie down whenever I need to. My anxiety and depression have improved considerably.

But while I’ve been feeling better by taking medical leave from my work prior to the birth of the baby, I haven’t been able to get a straight answer regarding my “birth plan.”

A birth plan is how you plan to give birth. It considers at-home birth, c-section, vaginal delivery, what types of anesthetic you’ll use, and so forth.

Given my POTS, and given my history of blacking out and pre-syncopal episodes (pre-syncopal or pre-syncope means pre-full-black out. This is when the room starts to go black around the sides, but I’m able to stay awake if I quickly lie down and raise my feet), and given my rare genetic condition concerning choline, I have stated several times now that I feel it might be best to have a c-section. I truly believe I’d black out during labor. I nearly blacked out during my last papsmear for God’s sake.

It’s not a squeamish thing. In layman’s terms, it’s the vagus nerve (which runs from the neck down to the pelvis) getting improperly stimulated, causing the body to black out. Even a bowel movement can create a situation where I’m pre-syncopal.

The problem is I haven’t completely, fully blacked out in years. How is this a problem and not a good thing? Because then doctors use this as an their excuse that I’m doing “great.” Nevermind all the pre-syncopal episodes I still suffer during the year.

It's a catch-twenty-two.

In short, I’ve learned what will cause a black out and I’ve learned earlier signals (like extreme fatigue), and so I’ve prevented black outs by not doing activity—often basic activity—and just lying the hell down. But because I’ve become so great at preventing black outs, that comes across as my health problem isn’t that bad. And often pre-syncope seems to be taken either with a grain of salt or as an exaggeration. Unless I lose consciousness it’s not considered serious enough. This was the problem that made it difficult to get diagnosed in the first place for so many years.

So my OBGYN referred me to a cardiologist for testing and consult to figure out my birth plan of action. He’s been under the opinion that if I have a c-section, he’s considering it “elective,” which then means my insurance company will not cover two thousand dollars worth of the surgery.  It will be an out of pocket cost because the doctor has not deemed it necessary.

I had hoped the cardiologist would be able to offer her opinion that a c-section would be best. Instead, I got put through the lousy holter monitor that didn’t always work, and an echocardiogram (which is where I caught that terrible virus with bronchitis back in August – a fluke disaster). I’ve had many of both. But whatever. I went along with the basic tests as a formality.

Her 15 minute follow up appointment she stated, “I don’t want to get into trouble,” meaning sued, for recommending a c-section, “just in case something goes wrong with the c-section.” She said, “There just isn’t the language to state to the insurance company that would recommend c-section for POTS. We don’t have the research to back it up as necessary. Other women have done fine.”

I get it. It’s her livelihood. I wouldn’t want to be sued either. But I really feel like she only spent two 15 minute appointments with me and barely knew my health history, yet charged hundreds of dollars for these consults. And I really feel like she has no understanding of the varying degrees of POTS severity. Some women ARE indeed fine with vaginal birth. Some women don’t have POTS severely. I, on the other hand, have had POTS severely. She’s definitely by no means anywhere close to being an expert. She told me she had done “some reading.”

I told her, “I gave you the NIH documentation stating that I have an abnormal baroreflex response. All of child birth is the baroreflex.”

The baroreflex is the bearing down reflex you use for a bowel movement and for child labor.

“There’s just nothing to back up needing a c-section.”

“Can’t we retest the baroreflex then?” It’s a simple, fairly painless test where you bear down on a device in your mouth, but something tells me Winnie Palmer probably doesn’t even have that test on hand.

She couldn’t answer this and adjusted her notes.

I started to cry and said, “So, okay, I need to know: if I have the vaginal birth and I black out during labor, what is the protocol?”

She got strangely hesitant about answering this.

I said, “If I black out—which is most likely going to happen—will the baby be cut out in an emergency c-section?”

Mind you, an emergency c-section can be worse than a planned one. The incision can be bigger and also sometimes sliced at a different angle (up and down the abdomen/ pelvis as opposed to a smaller incision across the lower pelvis). It can be harder to recover from.

I never got an answer out of the cardiologist. She deferred to my OBGYN and changed the subject to how she’d confer with an electrophysiologist about c-section and POTS.  An electrophysiologist has nothing to do with the baroreflex or testing this and I said that. She agreed but said he might have ideas about whether the c-section could be deemed necessary. Whatever that means.

Here I come to find out, there IS NO protocol if a woman blacks out during childbirth. In fact there’s not much protocol for a lot of emergencies during childbirth for the entire United States.

Check this out:




Funny Things to say to a pregnant lady, particularly one with an underlying chronic illness:

Genevieve Tyrrell

1)   “You better sleep now, because you won’t sleep after the baby comes!”

Thanks for this tidbit of helpfulness. I struggled with all kinds of sleep issues including terrible insomnia prior to ever being pregnant. And now that I’m pregnant, of course that got so much easier.

In fact, it’s a looming fear that I won’t be able to function due to lack of sleep after the baby, so make sure to remind me of this fear. It’s absolutely hilarious and you’re giving me real world prepping advice!

2)   Me: “Wow, the baby kicks a lot. It’s kinda cool but weird.”

You: “Just wait until after she’s born and kicking you with shoes on!”

Oh, so you wanted to see my cringe face! No really, you shouldn’t have. You could have just offered me a dirty tissue, bad coffee, or a colon cleanse coupon if you wanted to see my cringe face, but this is a funny substitute.

Actually, I have weak muscle tone from my health issues. If I can physically carry that baby after three months, I’ll be lucky or it’ll be a miracle. And lifting the baby off the floor will be a whole other heart rate sky-rocketing can of worms considering the tachycardia I have.

3)   “Your life is going to be over now.”

Lolololol! I’ve already been through periods of time of being bedridden, hospitalization, needing wheelchair help, unable to maintain a career or romantic relationship, considering suicide when the physical pain got so bad. My life is going to be over NOW? Now you say? *falls off the couch laughing*         

4)   “The second trimester will be much better.”

LMAO.  Ummmm we’re in the second trimester now. Where’s my unicorn?

5)   “You have a doctor for your health issue, right? What does he say?”

*shaking my head*

No, I do not have a specific doctor for my health issue. Actually Dysautonomia specialists are extremely, extremely rare. And even a specialist is playing catch up with the research. Dysautonomia diagnoses “POTS” are syndromes that have not been determined to have a definitive cause. Anything could be the cause. Multiple things could be the cause. There is no fix.

I spend a lot of my medical consults informing the doctors about my health issue.

This quote is similar to "But you have a high risk OBGYN, right?"

I love my OBGYN but he does not understand my health issue specifically.

6)   Me: “I’m upset about how crappy my job maternity leave is.”

You: “Actually, that company is better than most in the states.”


You: “It’s amazing women even get paid for having a baby these days.”

These are funny because they completely undermine my fear of being able to function after the baby because of my chronic illness and being able to support us. I get to feel more inadequate than the average healthy woman having a baby, while feeling guilty that I’m not more grateful.

7)   “Oh yeah I had a lot of fast heart rate when I was pregnant too.”

Unless you’re a POTS or NCS patient, or dealing with a chronic illness that has extremes in heart rate, I find your statement hilariously naïve.

My Body is Not my own - Pregnancy v. chronic illness - Healthy weight gain v. Insulin Resistance

Genevieve Tyrrell

The thing is – when I was at my worst points of POTS (Postural Orthostatic Tachycardia Syndrome) or NCS (Neurocardiogenic Syncope), I’d have the sensation that my body was not my own, that I had no control over it—how it acted, how it lost or gained weight, how it stayed upright, how much energy it could grant me. There were always negatives associated with this lack of control, and sometimes changes meant permanent bad change or worse symptoms to come.

And now that I’m 22 weeks pregnant, I’m feeling that same sense of “my body is not my own.”

My only history of that feeling is coupled with a chronic illness that at times took years away from my life. It’s hard not to feel panicky sometimes because of this. It’s hard not to feel a sense of dread and impending doom. It’s hard to see the impending joy that so many people keep telling me about.

Weight and body shape is one way in which I’m feeling lack of control similarities between my chronic illness and my pregnancy.

The weight that I’m putting on? Though it’s normal for a pregnant lady—it’s starting to remind me of back when I went for years undiagnosed with insulin resistance.  I went for years trying to get doctors to give me the glucose tolerance test (GTT) WITH insulin measurements at each interval. Back in 2009, before my weight had gotten up to 200 lbs, I even asked a trusted doctor who I admire whether being on Metformin (a blood sugar medication) might benefit me. The conversation never really went anywhere. In 2010 (?), I tried to get the rare diseases doctor handling my case at NIH (back when I was a research patient) to run the GTT.

She refused and said I was fine blood sugar wise if my fasting blood sugar and my A1C was always normal. (Actually, this is absolutely not true for insulin resistant patients. My fasting blood sugar and A1C are usually quite normal).

Even after I got my first GTT, my general practitioner at that time didn’t read the results correctly. I needed a really great endocrinologist years later (end of 2013) to know how to give the test and how to read the results. Then, after taking my history and doing lab work, she felt that I had probably dealt with insulin resistance even as a dieting skinny teenager. People can have an underlying genetic issue that predisposes them to insulin resistance. People can even be skinny when they start out with insulin resistance. For years.

While undiagnosed I went from my lowest NCS/ POTS weight of 125 lbs up to 230 lbs before I stopped looking at the scale. And most of that weight was on my abdomen. I looked like a pregnant woman, but I didn’t have the impending joy to go with it. There were no baby kicks, there was no loving partner, there were no friendly faces. In fact I stopped going to the beach after two young men walking behind me on my way out to the sand made cracks about my weight and what a real fatty I was.

At some point between 200 – 230 lbs I took a vacation with my parents before I started my current teaching job, back in September 2013. At that point I figured I’d take a photograph of myself in a bathing suit, because I couldn’t believe how absolutely out of control my body had become. It looked foreign to me. I remember saying, “Holy shit, I look pregnant.” Only I wasn’t. I was just very improperly diagnosed at the time.

NOT pregnant - Insulin Resistance out of control - September 2013 - in my bathing suit at hotel

NOT pregnant - Insulin Resistance out of control - September 2013 - in my bathing suit at hotel

Once diagnosed, I was put on Metformin and taught about how carbohydrates and protein effected my blood sugar. I was given a Diabetes booklet on how to eat. Within three months I lost the first 40 lbs. At one point I got as skinny as 130lbs again. Just before I was pregnant I was at 149. Healthy.

At 21 weeks while getting over Bronchitis no less.

At 21 weeks while getting over Bronchitis no less.

At almost 22 weeks.

At almost 22 weeks.


On one hand I’m joyous looking at my baby bump because now it’s a bonafide baby bump. On the other hand, every time I look in that mirror I think back on that picture of me in my bathing suit from 2013 absolutely freaked out about my shape.

Let me be clear—it wasn’t just the weight itself though. It was all the health issues associated with that weight—the shortness of breath, the exhaustion, the back pain, the feeling like I had a weight belt around my stomach at all times that I wished I could just take off, the overheating because of the extra fat, the blood sugar crashes, the bouts of feeling starving and needing to eat way more than I should.

And then there’s the anger.

How many times was my insulin resistance overlooked? How many times did I ask to have that checked? How much of my career was lost because my blood sugar was so unbalanced that it would provoke my POTS and NCS symptoms? (Dysautonomia patients are actually more likely to faint due to changes in blood sugar).

The bottom line though?

Chronic illness has greatly shaped my view of pregnancy symptoms. And part of functioning day to day is working on changing my own perception of “my body is not my own” as something that has the potential to be extremely positive. It’s not easy though. The past still haunts me.

Sunday Before Week 20 - Hi

Genevieve Tyrrell

August 21st, 2016

showing off horror flick moves in utero

showing off horror flick moves in utero

I’m starting this blog because while I found a ton of info, articles, and blogs on whether or not I should conceive while chronically ill, I didn’t find a whole lot regarding the in-over-my-head feeling I have now that I am pregnant while chronically ill.


This really came to a boiling point this week, because on Monday, August 22nd, I’ll be twenty weeks pregnant (5 months)—the “half way point” of pregnancy—and I've felt the worst I’ve felt yet, while every pregnancy app out there says stuff like, “You’re probably feeling like you have much more energy now! Most women feel this way in the second trimester.” To top it off I woke up yesterday with a sore throat, headache, and cough, which will mark the fourth time sick while pregnant (I’ve already dealt with Shingles and Epstein Barr reactivations), because when you have a chronic illness, getting a cold is pretty darn easy.


I’m a writer and artist. It’s what I do. I suppose I need this in order to process the isolation at times, but the more I thought about it, the more I realized, If I feel this way, how many other women must too?


So I dedicate this to you, ladies. We are the “high risk” ladies. We are the knocked up chronically ill. We are the invisible illness ladies and the not so invisible illness ladies, working on making a human while trying to function basic tasks. I toast this start off message with a non-alcoholic beverage just for you.


My journey begins as a POTS (Postural Orthostatic Tachycardia Syndrome) patient, co-diagnosed with Fibromyalgia, Chronic Fatigue Syndrome, Insulin-Resistance, Hypothyroidism, and a couple of amino acid or vitamin deficiencies that are the first of their kind documented in the entire world. I was a research patient for about six years. I’ve had more tests done on me than I care to remember. I wanted to make a difference though for other POTS patients. Finally, this research paper was written and published about my cells. (See: ) Hopefully it will help others.


Just before I got pregnant I had the worst bout of Shingles in years and period that lasted a month (they found a polyp and presumed that was the cause). I didn’t anticipate my body was even well enough to conceive, let alone maintain a pregnancy beyond the first trimester. And we weren’t trying to conceive. I simply miscalculated my ovulation because of all the previous bleeding like a total moron and the lousy mathematician I am.  My mother had asked, “How did this happen?”  Well, Mom, the usual way combined with sheer stupidity, really.


In fact I had already decided I wasn’t well enough to try to have a pregnancy. I had set up an appointment with a fertility doctor to discuss getting my eggs taken out. I had filled out forms to receive information about adoption. My significant other hadn’t proposed yet, but I’m thirty-five. I figured it was high time I plan stuff. Frozen eggs and adoption info seemed logical. And terribly responsible. I would have children at forty via adoption or surrogacy if—and only IF—I was well enough then. I was pretty proud of my well-planned genius self.

Here's a snapshot of a dorky thirty-something couple with almost everything figured out during Christmas vacation.

Here's a snapshot of a dorky thirty-something couple with almost everything figured out during Christmas vacation.

But we got pregnant and I figured if out of all the miraculous things that had to come together in order for my body to even conceive, I would help this life the best I could. There are parents out there dying to conceive. Maybe, I thought, this is the lucky gift I get after so many years of suffering a serious chronic illness?